More than 30 percent of Americans are living with some form of chronic or severe pain. More people live with chronic pain than cancer, heart disease, and diabetes combined, for a total of between 100 million and 116 million people.

Because of some healthcare workers’ attitudes toward opioids and media coverage of the opioid epidemic, when patients bring up the fact that they live with pain, they’re looked at with skepticism, questioned relentlessly, second-guessed, and judged.

“A lot of people can’t even conceptualize what being in horrible pain every minute of your life feels like,” Shelley Smith, who lives with fibromyalgia and blogs at Chronic Mom, told Healthline.

Pain advocates like Cindy Steinberg, the national director of policy and advocacy at the U.S. Pain Foundation and chair of the Policy Council of the Massachusetts Pain Initiative, are working to correct the narrative of pain patients as potential addicts.

She believes that pain treatment is complex and said that the media’s coverage of the opioid epidemic harms people who truly live with pain.

The opioid crisis “grabs headlines. It’s juicy,” Steinberg told Healthline. “So the media flocks to this topic, and politicians love grandstanding about it. They don’t understand the nuance or the complexity of this issue.”

Smith has also seen this firsthand. “There’s not a lot in the media about chronic pain patients. It’s all about addiction and people abusing their pills. But there are pain patients suffering long term and they can’t get any help from the medical community,” she explained. “No one is willing to listen to them.”

Opioid abuse has been called the deadliest drug epidemic in U.S. history.

But the epidemic is driven primarily by illegal — not medical — abuse of prescription pills.

A study of over 135,000 opioid overdose victims found that just 13 percent were chronic pain patients.

Still, pain patients bear an inflated burden of the backlash against opioid use, which was driven by the pharmaceutical industry in the 90s.

Opioid prescriptions picked up in 1995 with Purdue Pharma’s introduction of OxyContin to the market, Annual Review of Public Health reported.

“Between 1996 and 2002,” the journal noted, Purdue “funded more than 20,000 pain-related educational programs through direct sponsorship or financial grants and launched a multifaceted campaign to encourage long-term use of [opioids] for chronic non-cancer pain.”

In 2007, Purdue “pleaded guilty to federal charges that they misled doctors and patients” and paid more than $600 million in fines.

But Purdue wasn’t the only drug manufacturer peddling opioids — which also include Vicodin and Percocet — without mentioning the potential for abuse.

The pharmaceutical industry’s aggressive marketing of opioids led to a quadrupling of such prescriptions between 1999 and 2010.

A Washington Post and 60 Minutes investigation also found evidence that pharmaceutical companies helped shape and lobby for a law passed by Congress that undermines the Drug Enforcement Administration’s (DEA) authority to stop opioids from flooding into the market.

From extreme marketing of opioids to President Trump declaring the opioid epidemic a “public health emergency” — this reflects a drastic change in the attitudes around prescription pain medication.

Dr. Susan Glod, in a commentary in the New England Journal of Medicine, wrote that the vilification of pain patients “is the result of an all-or-nothing approach to pain management under which the pendulum has swung from one unsustainable end of the spectrum to the other in the past two decades.”

The CDC reported that nearly half of overdoses in 2015 involved a prescription opioid and that “sales of prescription opioids in the U.S. nearly quadrupled from 1999 to 2014, but there has not been an overall change in the amount of pain Americans report.”

Opioids are often getting into the hands of people who don’t have pain, and opioids don’t eliminate the pain for many people with chronic pain.

But Caitlin Carroll, a spokeswoman for the Pharmaceutical Research and Manufacturers of America (PhRMA), an advocacy group for biopharmaceutical research companies, also pointed out that there are “legitimate patient needs that exist.”

“Any policy that we consider should balance the need to help prevent prescription drug abuse and misuse while still balancing the millions of Americans who deal with acute and chronic pain.”

The chronic pain epidemic goes ignored

A Healthline survey of nearly 600 readers with chronic and severe pain revealed that 36 percent of people are dissatisfied with their pain medication. Only 5 percent reported that their medication totally resolved their pain while 50 percent got some relief — but 45 percent said it wasn’t enough or didn’t help at all.

A separate survey of 249 Healthline readers with acute knee pain showed that though just over half had taken a prescription pain medication, only 4 percent reported that such medication totally treated their pain. Fifty-two percent said their medication wasn’t enough to resolve their pain, and 44 percent reported that it helped somewhat.

Lynn Crisci was at a nearby cafe on the day of the Boston Marathon bombing when the explosion went off, jarring her brain and leaving her with a traumatic brain injury (TBI), a chronic lower back injury, hearing loss, and PTSD. She deals with horrible pain daily from that TBI, plus a previous TBI from an accident.

Crisci told Healthline that not only did opioids bring on brain fog — already an issue with her TBIs — but caused serious constipation. Focused on treating her pain, her doctors didn’t treat the medication’s side effects.

Crisci ended up with multiple organ prolapse, requiring several surgeries.

“My digestive system will never be the same,” Crisci told Healthline. “I’m in pain from scar tissue pressing on nerve endings in my colon. Opioids have done irreparable harm to me.”

Opioids can be powerful treatments for many chronic pain patients, though. Smith used to be an avid hiker, frequently immersing herself in nature on 10-mile hikes.

When she began experiencing fibromyalgia after the birth of her second child, she could hardly get out of bed at times — let alone enjoy nature. The pain was so overwhelming.

“I’ll never go back to how much I used to do, but once I actually got access to pain medication, I was able to take a family vacation to Yellowstone and can go on one- to two-mile hikes with my kids. My pain level is really high afterward, but I can do it because I have pain medication,” she explained. “I feel lucky to get a little piece of my life back.”

So if clinical and anecdotal evidence shows that pain medication is only moderately beneficial in treating chronic pain and causes unwelcome side effects, why do doctors persist in prescribing them, and why do patients persist in taking them — when they can actually get them?

The short answer: Neither doctors nor patients have a lot of other choices that work significantly better. The longer answer: Individualized care, which pain experts agree is the best course in pain treatment, takes much more effort and knowledge than most doctors are able to provide in the limited amount of time they have for evaluation. And it often costs more than health insurance companies would like to spend.

Share on PinterestLynn Crisci spent four days in the hospital in February 2016 for electroencephalogram (EEG) testing, which measures electrical activity in the brain. She also dealt with a multi-day migraine that week, but said, "My service dog Lil Stinker was the light in my painful darkness, as always!" Photo: Lynn Crisci

The blame game

In terms of time, stories of doctors not having time to listen to patients’ complaints beyond the cursory are legend. They cram in as many patients as they can — a 2013 study found new doctors spent eight minutes with each patient — submit as many insurance claims as possible, and then they drown in paperwork. Doctors say it’s not that they don’t want to listen to patients, it’s that they can’t afford to.

In terms of knowledge, the Journal of Pain reported in 2011 that pain education among U.S. physicians was “limited and fragmentary.” Medical schools in the United States require only nine hours-worth of learning on pain management. By comparison, some veterinary students spend five times as many education hours focused on pain management, according to one expert.

Crisci, who is the Massachusetts Ambassador for the U.S. Pain Foundation and director of Medical Marijuana Advocacy for Leaftopia, said that one of the main factors for the mistreatment of chronic pain patients is the way doctors are educated.

“There’s very little to no training in chronic pain treatment, but doctors are taught to look for signs of addiction. People who ask for pain medication are assumed guilty until they’re proven innocent,” she pointed out. “You feel like you’re on trial.”

PhRMA’s Carroll, too, pointed a finger at physician education, saying her organization advocates for “mandatory prescriber education — increasing it, and making sure that it’s ongoing and that it reflects the growing body of information that we have about pain management and about the risks of addition.”

In defense of the education doctors receive regarding pain management, Patrice Harris, MD, immediate past chair of the American Medical Association (AMA) as well as the chairwoman of the group’s AMA Opioid Task Force, said that it’s part of a physician’s job to maintain competency that’s relevant to their practice.

Harris suggested that insurance companies may be a potential source of blame. The rules around insurance are byzantine, varying from provider to provider and state to state.

There are any number of provider and patient variables, muddying the waters on costs — copays, deductibles, coinsurance — and benefits significantly.

But it’s safe to say that insurers favor drug therapy, and a copay for medication can be less than that of a visit to a physical therapist.

“Perhaps the physician wanted to recommend physical therapy, but there may be a higher copay, and there are usually limits” to the number of visits the patient can have, said Harris.

But inarguably, it’s faster for a doctor to get a patient out of the office by dispensing a prescription or refusing to provide treatment than it is to discuss complex treatments for complex topics like pain.

There’s no doubt that navigating insurance requirements can be arduous.

So, while the government mulls action, policy makers stumble toward potential solutions, and the healthcare community points fingers over who started the opioid crisis, pain sufferers are caught in the middle, desperate to find relief and willing to try almost anything to get it.

“Beyond not being treated, the chronic pain community is being mistreated by being stigmatized,” Crisci stressed.

“Their families are told that they’re acting out for attention, that they need mental help, that the pain is all in their heads. It kills the foundation of their support system and makes recovery even more difficult,” Crisci said.

According to Smith, “The chronic pain community has been completely abandoned.”

Share on PinterestShelley Smith tried different ways of dealing with the pain without medicine, from yoga and meditation to hot baths. “It didn’t work for me at all. I kept getting worse and worse,” she said. After a year, her doctor prescribed her a low dose of Vicodin, which helps her sleep at night. Photo: Annie Mulligan

Fear of addiction leaves pain patients without the medications they need

But there’s a difference between addiction and dependence, as pain advocates are quick to point out.

“Addiction is a behavior. Dependence is where their body has become totally and completely dependent on that medication, and that’s the key to tapering them off of that medication,” said Penney Cowan, the CEO of the American Chronic Pain Association (ACPA).

People who are dependent on medication “believe wholeheartedly that that medication is the only thing that’s going to help them manage their pain, because that’s the way it’s been treated for so many years,” Cowan said.

In a recent Healthline survey of acute pain, 63 percent of respondents said they were “not at all dependent” on their medication, but about one-third, or 32 percent, felt they were dependent.

Healthline’s survey of chronic pain patients showed similar results, with 29 percent of patients saying they felt dependent and 66 percent saying they did not.

Nearly half — 47 percent — of respondents said they experienced side effects that were physical, emotional, or both when they stopped taking their medication.

It’s one thing to define psychological dependence medically, but, Cowan explained, “for a person with pain, it’s not even the pain. It’s the fear of the pain. We never know when it’s going to hit and how hard it’s going to hit. It controls you.”

Indeed, Healthline’s survey of people who experience chronic and acute pain found that around one-third of respondents felt “definitely” or “somewhat” dependent on their medication.

However, most overdoses from opioids are from nonmedical drug use. The New England Journal of Medicine reported that in 2014, “a total of 10.3 million persons reported using prescription opioids non-medically (i.e., using medications that were not prescribed for them or were taken only for the experience or feeling that they caused).”

In many articles about addiction and overdoses, opioids and heroin are mentioned in the same breath.

That makes it increasingly difficult for people living with chronic pain to get the medications they need to make it through the day.

“Millions of Americans are… hoping for the day when they can be free from chronic pain. Our life-inhibiting problems deserve far more attention from policymakers and the healthcare system than they’ve gotten. The opioid crisis is indeed dire, but so is the epidemic of chronic pain,” Julian Malinak, who has chronic back pain, wrote in Vox.

More awareness from healthcare providers

The tide may be turning from studies that present alarming rates of addiction and overdoses to studies that examine both the long-term benefits of opioids for chronic pain and how to better train doctors to be aware of chronic pain patients’ need for individualized care.

A year ago, the CDC devised 12 strategic recommendations for doctors prescribing opioids. The first? “Nonopioid therapy is preferred for treatment of chronic pain. Opioids should be used only when benefits for pain and function are expected to outweigh risks.”

Harris of the AMA, meanwhile, said that her organization’s first recommendation to doctors is to consult state Prescription Drug Monitoring Programs (PDMPs), which are electronic databases used and maintained by states to track controlled substances and help identify doctor shopping.

But this check in the system actually prevents people in a great amount of pain from getting the drugs they need.

Many doctors avoid the trouble that opioids bring with them — potential consequences and state scrutiny — by turning their backs on pain patients.

“Everyday pain patients are the ones being put on trial and criminalized because of the opioid crisis. I sign a paper every year now because I am prescribed a pain killer. I have to sign a contract just to pick up my prescriptions that says I agree to submit to random drug tests,” Crisci revealed.

Harris said that the AMA is “very supportive of both nonpharmacologic and pharmacologic alternatives to opioids, because the more tools the physician has in their toolbox, the more they are able to work with their patients to come up with the best alternative.”

She added that the organization is “generally supportive of the CDC guidelines, but at the end of the day, the choice of the treatment should be left between the physician and the patient.”

ACPA’s Cowan agreed, saying she believes pain should be treated “based on individual medical needs, records, examinations. My sense of what’s happening is that providers are going by what they’re hearing in the media instead of looking at each patient individually and determining what the best treatment is.”

Alternative therapies

People who suffer from pain truly will try almost anything to alleviate their symptoms.

Healthline’s recent survey of people with chronic and acute pain found out that there’s almost no treatment they haven’t tried.

Physical therapy is one of the most popular and successful types of alternative pain relief, and yet it’s frequently inadequately covered or not covered at all by insurance. With that in mind, it’s difficult to imagine submitting a health insurance claim for a weekly yoga class or VR headset.

Many pain patients use multiple alternatives to prescription pills to ease their agony, because pills can’t completely dull the pain.

“Nothing cures it and takes away all the pain, but I love being able to control it,” Crisci told Healthline, describing her daily approach to pain.

Crisci has several ways to take her pain “down by 10 percent” throughout the day. Over a typical day, she takes several supplements, from turmeric to CoQ10 to reduce inflammation, then a half-puff of medical marijuana (CBD oil) in the morning. She goes for a walk, uses an ice pack or heating pad, meditates, and takes two puffs of CBD oil at night to fall asleep.

She also credits a daily gratitude practice, where she lists the things she’s grateful for in detail, with making the pain more bearable.

Finally, she keeps her service dog, Lil Stinker, with her to reduce her anxiety, and therefore the pain.

Sympathy and stigma

One thing everyone can agree on is that a stigma still exists around chronic pain. The fact that chronic pain is what Cindy Steinberg calls “an invisible disease” makes it frequently overlooked or even mocked.

In addition to working at the U.S. Pain Foundation, Steinberg runs a monthly support group in the Boston area.

She believes that more empathy and understanding for people with chronic pain would go a long way toward ameliorating the shame and stress of it for people in pain.

“Oftentimes [people in the group] have to cancel on friends, so their social life begins to suffer. Their family life. They can’t take care of their kids anymore — or work. Without being able to earn an income, your self-esteem suffers.”

Chronic pain, Steinberg said, “has such a profound effect on every aspect of your life.” She contrasted the way people treat those with chronic pain with the way they treat those with cancer. It can be just as serious, she said, but “you don’t get the same accommodations made, or people being sympathetic, or doctors listening to you. It’s a very tough situation to be in.”

Cowan agreed. When you tell others you have chronic pain, she said, “You’re telling them ‘I’m not dependable,’ because that’s the stigma attached with chronic pain.”

Healthline’s survey of chronic pain patients revealed that 65 percent of respondents have experienced stress, depression, or anxiety as a result of their chronic pain.

Most respondents have told their family (83 percent) and friends (64 percent) about their chronic pain, but only 29 percent have discussed it with their coworkers.

Of those who have shared their chronic pain status, 46 percent felt understood and supported. About the same amount, 41 percent, felt “misunderstood and alone.”

Perhaps that’s because friends and family they’ve told are overwhelmingly unsympathetic: 75 percent were only somewhat, not very, or not at all sympathetic.

Cowan compared people with chronic pain to those with diabetes or high blood pressure, saying, “They’re people like anyone else who happen to have a health issue. We can help them to move from a patient back to a person again, but they do need help, and they need support.” Insulin won’t cure diabetes, just as medication won’t cure chronic pain, Cowan explained.

Harris said the AMA’s recommendations specifically include reducing the stigma around chronic pain to enable effective care. “I have heard some patients say they were ashamed to be seeking treatment for pain,” she said. Opioid crisis or not, she said, “We want patients with pain to get treated for pain.”

Unfortunately, many people avoid medical treatment or don’t take their prescription drugs as prescribed.

Stigma from healthcare providers made Smith gravely ill.

She gets kidney stones frequently, and when she went to the ER and disclosed she was prescribed Vicodin, they “would give me a hard time about faking and being a drug addict, even though I clearly had a kidney stone.”

“The treatment in the ER has gotten so bad that I don’t go to the ER for kidney stones anymore,” Smith revealed.

Her refusal to go to the ER has led to serious infections.

“There have been a couple times I’ve endangered my life refusing to go to the ER because I knew they wouldn’t take me seriously,” Smith said.

The ongoing battle

The future of chronic pain medication management may be balance. The CDC recommends “balanced prevention responses that aim to reduce the rates of nonmedical use and overdose while maintaining access to prescription opioids.”

Patient advocate Cowan said America must take “a balanced approach of a number of therapies that have to come together to actually help [people with chronic pain].”

According to Harris, “So many factors have led us to where we are today, which is why there’s no one magic bullet. It’s a very complex public health problem.”

Carroll agreed: “This situation didn’t start overnight, and it’s not going to be solved overnight.” She recommended that we “look at the different factors that are contributing to the current crisis and ask, ‘What can everybody in the healthcare community be doing to help?’”

Perhaps the healthcare community can begin with more studies on opioids and chronic pain. According to the CDC, “few studies have been conducted to rigorously assess the long-term benefits of opioids for chronic pain with outcomes examined at least one year later.”

More of such studies would benefit those with chronic pain, as would broader public understanding to lessen the stigma and build empathy for those who experience it.

Certainly, better physician education around chronic pain and dosing guidelines would help, as would more studies of alternative therapies — not to mention better insurance coverage of these potential remedies.

Carroll said the pharmaceutical industry is investigating the possibility of changing the formulations of some opioids so they’re more difficult to abuse.

Smith is grateful for an understanding doctor and access to a small dosage of Vicodin that helps her get up every morning. “I’m one of the lucky ones,” she said. “I’m going to take every chance I get to live life to the fullest.”

Crisci has found a purpose as an advocate and educator for other chronic pain patients. “Advocacy and helping other people gives me a purpose. Everyone with chronic pain needs to find a purpose,” she said.

In the meantime, support groups like the ones led by Cowan and Steinberg can help, because it seems people with chronic pain mostly have to learn to live with it without help from modern medicine.

Written by Anna Wahrman with additional reporting by Whitney Akers on November 9, 2017